Trying to help my dad... | Arthritis Information

Hi everyone...

Desperation has brought me here and I'm hoping someone can help... Forgive me for any ignorance as I am not very familiar with pmr other than some basic research that I had done 7 months ago. Now, out of necessity, I need to do what I can to help my dad get the help he needs.

My dad (66 y/o) was diagnosed with PMR in July 2008 (so 7 months ago)... It breaks my heart to see an active, vibrant man turn into..well..there are no words... he seems just so broken in his spirit. His doctor prescribed pred (20 mg AM and PM) and within days he had relief. Since then, the rheumatologist has weaned him completely OFF the pred. (this is in just 7 months, mind you). I'm not too clear on how gradually or not the tapering has happened, but from everything I've read everywhere, 7 months seems too fast to be completely off when the man is now back to the way he started.

He did tell me that when he was at about 10mg morning and night that he felt good, but once he started going below that he was having problems, but the doc just kept tapering him down.

So. Where do we go from here? He responded to the pred very well. I know that pred itself is a beast of a drug and that the side effects can be unpleasant and sometimes dangerous in and of themselves.... But what other alternative is there?

Does anyone agree that perhaps the doctor weaned him off too quickly??

Any and all information anyone can provide would be so greatly appreciated. I just want to make sure that when he goes back to this doc on Monday he is armed with good information and a steady direction.

I offer my heartfelt thanks....

~Lauren

yankee1232009-02-12 17:20:48Hi Lauren

I am absolutely flabbergasted at what your Dad's Rd has done to him. The normal routine in start pred at the doseage that makes you most comfortable. In my case it was 20 mg. After a couple of weeks then you start to reduce to 17 1/2 if you can. If you are on 5 mg tabs, cut tab in half. If you are on a higher dose it may be 5 mgs. at a time until you get to 20 mgs. I was very lucky as my Dr. left it to my discretion as to when and how much to reduce as long as I was careful. We on the board had a system as to how to reduce and to ease your body into the lower dose. If your Dad is put back on pred. let us know and we can help you along. I think also I would attempt to find a new rheum. if the present Dr. does not put him back on pred. There is no reason for him to be suffering this way.

I had PMR for 3 years but was only dxd after the 2nd year (new Dr.). My total time on pred. was a little more than a year and the last few weeks I did not have PMR but still could only decrease 1 mg every 3 weeks. The unfortunate thing is 3 weeks after PMR left my body I developed Fibromyalgia. I know that there are still a lot of people with PMR that still monitor this board so you can always find someone to help. It makes so much difference when you have someone to talk to. Like I said...if this rheum. does not take immediate steps to help, get a new one right away. Any questions at all just holler.

Take good care.

Lauren -

Was there a reason that the dr. did not want your dad to continue with the prednisone? For some people, prednisone does have serious side effects, but unless they are life-threatening, the pain and debility of PMR can be worse. Please suggest that your dad see another rheumatologist. I myself just go to my family doctor for my prescription, and he lets me regulate my own dose as I am the best judge of how I feel. (I'm at 3.0 or 3.5 mg per day now, after 3 years, and leading a normal and physically active life, although I feel pretty stiff sometimes!)

Ruth

Here is my same old sing and dance again. I am still doing good. No relaspe so far. Still a little stiff in my hips. Not taking any meds. I offer you the suggestion of getting him on some healthy supplements in addition to any meds he must take. Check with his doctor and if he can take fish oil get him a good brand and let him take a big dose. Also if he can take ginger and tumeric - i like new chapter zymafland. THese are anti-inflammatories that will help your body fight inflammation naturally but may take a while to work. I am for trying to get your body in a healthy state so it can fight this thing. ALso, check out the french bark called pycogenol (i think i misspelled it but you shouldbe able to google it). This is also a natural anti-inflammatory. I suffered thru this without the pred and got off the nsaids as soon as i could just stand the pain. I have been steadily getting better. But i will say it usually goes three steps forward and one step back. I think there is pain in healing. Like if you b reak a leg - there is pain afterwards but it is a healing thing. I read a good article on that - dont remember if it was on this site or something i found googleing....but it made good sense. I had a blood test today and hope things are still normal. My last test had everything in good order. I will also add that the worst i ever felt was when i got off the pred (only took it for three months). But I got thru it and have seen slow but sure recovery. I do still take the fish oils and other natural anti-inflammatories.....I want to keep myself revved up with an arsenol to fight this thing should it ever try to come around again! Good luck to all.In June 2005 I started with 20 mg and tapered 2.5 mg every 3-4 weeks. When I came to 10 mg, I tapered 1 mg at a time and stayed on the new dose at least a month. When I reached 5 mg I had to stay there a year as I went up and down when tapering 1 mg. After that year I started tapering 0.5 mg and took two weeks to go over to the new dose. First one day with the new dose, two days with the old dose and after a week I alternated new and old dose for another week before going over completely to the new dose (after 2 weeks). Then I stayed on the dose for at least a month. Often more. I also chose a date when I had nothing important the first week or so after starting the tapering (to avoid problems when tapering). In Sweden, we used to have 5 mg, 2.5 mg and also 1 mg tablets. They all seemed to cost the same per tablet although they had such a different strength. I don´t know if it for cost reason that they don´t have 1 mg any more. We have subsidized medicine and after having paid about £ 150, we have free medicine a year from the start of the new payments. We have a staggered discount and at last we pay only 10 % of the real cost before coming to 0 - when we have paid £ 150. We don´t have 1 mg tablets any more. I have used 2.5 mg tablets and split them into four parts of each 0.65 mg. Therefore I really tapered 0.65 mg at a time the last year or so. It seems that many countries don´t have the 1 mg tablets.

I think (however, I am no doctor) that when you reach 5 mg, the dose is so low that there cannot be any bad side effects and you don´t have to worry about taking pred. I also think that leading an almost normal life is more important than trying to get off pred as fast as possible. To me it seems as if especially ladies want to get off too fast and then they have flare-ups and have to start all over. After 3 ½ years, I got off pred some week before Christmas and I am still OK without pain. I never had any hard pain as most of you seem to have, so I guess I have been lucky.

At the end of January, I spent a week in London together with my wife and two friends. I just had to take it a bit easy when walking, especially in stairs and uphill. But I could participate in all activities. I am male and 71, so when I sometimes feel tired of walking, I really don´t know if it is from pmr or from age - maybe both

Finally I hope that you all get off pred - but take it easy and don´t push too fast! I am five years older than your Dad, so I think there is much hope if he does it right.Got this from a health site......

"Another possible complication to coming off steroids is steroid withdrawal syndrome, or rebound effect, which is the body's exaggerated response to removal of the drug. Rebound effect can result in fever, muscle pain, and joint pain making it hard for the physician to differentiate between withdrawal symptoms and a flare of the disease itself."

Hang in there....it is complicated!

Becaause the bodies natural production of steroids cease once you take co-costeroids, it takes quite some time (up to six months) for the bodies natural production to kick in. My Rheumy says once down to five, stay there for three months, then drop by 1 mg every month until you are down to none. This makes sense as the mathematical drop is greater the lower you start from.

Ragnar, the reason most ladies are desparate to come off steroids is the weight gain and in this culture of ours - the pressure is enormous. I sometimes want to hang a placard around my neck and say - no I am not a greedy pig - its steroids and I have to take them.

Thank goodness in the UK we have the NHS and we still have 1mg tablets - not 'enteric coated' like the 10,5 and 2.5mg tablets, but when you have to take the 1mg - then you are prescribed a gastro inhibitor.

Its strange but men seem to recover quicker than women and also the incidence of men getting pmr and gaca is very low in relation to women. Good Luck and I am so gald you enjoyed the capital - but other parts are just as lovely. I loved the bit of Sweden I saw in my teens Malmo. Many years ago,

mrs UK

To all of you who responded, I thank you...

I have forwarded your responses on to my dad...

He actually had some pred left so he started taking it again to hold him over until his appointment on Monday.... and he said that he is feeling a bit better already...

I am praying that he gets this worked out so that he can go back to enjoying life...and I will come back and update and perhaps seek additional experiences with tapering and supplements, etc.

Thank you so very much for being there and for sharing your experiences in this time of need for my family!

~Lauren